If you are the parent or caregiver of a disabled child, you are likely well acquainted with the unique challenges of finding child care. Children with disabilities often require specialized, loving and comprehensive support. This care is essential to help disabled children grow and reach their full potential, but it can take time to find the care option that best fits your needs.
“Child care is critical to helping children with disabilities develop social skills and thrive into adulthood,” says Robyn Linscott, director of education and family policy at The Arc of the United States, a disability advocacy organization.
Many families can’t provide this care on their own, yet finding child care for disabled kids can be a daunting, confusing task. Simply wading through the many options can leave you overwhelmed.
We are here to help. Read on for a close look at child care options for disabled kids, including detailed information about the benefits, cost and other important factors.
How is child care different for kids with disabilities?
Parents and caregivers of children with disabilities or chronic conditions understand the importance of supportive care, says Stephanie Lewis, a licensed independent clinical social worker and the executive director at Epiphany Wellness Center.
In a nutshell, care for disabled kids involves “a range of services that are tailored specifically to your child’s physical, emotional and developmental needs,” says Lewis. These services may take place in your home, in a child care center or in another type of facility that accommodates disabled children.
“This form of care creates an inclusive environment where they can fully participate in daily activities and get involved in social interactions,” Lewis adds. And child care for disabled kids doesn’t only help the children it serves; it provides much-needed support for the parents and caregivers of disabled children, many of whom are working overtime and stretching themselves mentally, emotionally and financially to ensure their children’s needs are met.
7 options for disability child care
There are many different types of disabilities experienced by children. As such, there isn’t only one solution when it comes to care options. Each child has unique needs, and therefore will require specific services and accommodations. Likewise, each family is different and will have varying financial realities, home set-ups and schedules.
Here, we’ll look at the various disability care options available to families.
1. Family care
Family care, or home care for a disabled child, is just what it sounds like: it’s when a family member takes care of a disabled child. This isn’t always a parent — it could be a grandparent, aunt, uncle or other family member.
Family care has its perks, including the peace of mind that comes with knowing your child is in the care of a trusted loved one. But it isn’t without challenges. “This kind of care keeps your child in a familiar setting but it can be emotionally draining for caregivers,” Lewis says. Other concerns include figuring out compensation and clarifying boundaries with caregivers.
Benefits of family care for disabled kids
- Child is in the care of a loving family member.
- Usually free or low-cost.
- Offers scheduling flexibility.
- Takes place in a familiar setting, such as your home or a relative’s home.
Cost of family care for disabled kids
Family care is often free, if a parent or willing grandparent is providing this care. In other scenarios, you may compensate a family member who is providing the care.
2. Mature sitter care
Find qualified sitters.
Mature sitters can include anyone from professional child care providers to experienced individuals in your community. It can be helpful to canvas your local disability support groups, where you may be able to connect with caregivers who understand the concerns you have and the accommodations your child needs.
One benefit of hiring a sitter is that they “can provide more personalized attention in the comfort of your own home,” Lewis says. Keep in mind, though, that the cost may vary considerably depending on their qualifications and experience, she advises.
Benefits of mature sitters
- Usually less expensive than a nanny.
- Allows for more scheduling flexibly.
- Care typically occurs in your home.
- Allows parents more direct control of their child’s care.
Cost of hiring a mature sitter
Mature sitter pay rates can vary widely, based on your location and how experienced your sitter is, but costs typically start between $16.75 and $23.75 per hour.
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3. Special needs nanny
Find a full time nanny.
A full time nanny can be a great option for disabled children and their families, says Angelica Kapsis, president of VotRite, a group focused on enhancing voting software accessibility, with a particular emphasis on ADA (Americans with Disabilities Act) compliance.
Nannies usually provide care during more hours than sitters do, which is a bonus for working parents or parents of disabled children who may need overnight help. Some nannies can even provide live-in care.
Nannies are hired directly by the family and are typically an out-of-pocket expense, says Kapsis, noting that pay range for a nanny can vary significantly. While nannies are a great choice for many, they may not be the best choice if the child needs skill development or requires specialized care, Kapsis says.
Benefits of experienced nannies
- Increased availability.
- Overnight or live-in care is possible.
- Great option for working families.
- Offers personalized care.
Cost of a nanny for a child with disabilities
Nanny pay rates vary considerably, by location, experience and the type of care that the nanny provides. “It can be… [up to] $50/hour, if the nanny has specialized skills,” Kapsis says. Hourly rates typically start between $19.06 per hour to $25.35 per hour and increase from there.
4. Licensed child care centers
Find a child care center.
Licensed child care centers can be a fantastic option for many children. These centers “offer a wonderful structured environment and present important opportunities for socialization,” Lewis says. In some cases, though, they aren’t able to offer the individualized care some children require, she says.
It’s important to keep in mind that all privately run, licensed child care centers must comply with Title III of the Americans with Disabilities Act (ADA). Title III states that child care providers cannot exclude persons on the basis of a disability and must make reasonable modifications in policies, practices and physical accessibility to integrate those with special needs into the center.
Keep in mind that if a child care center is run by religious entities like churches, mosques or synagogues, they are not covered by Title III.
Benefits of child care centers
- Structured environment and routine.
- Opportunities for socialization.
- Allows each child to be a part of a community.
- May be less costly than sitter or nanny care.
Cost of licensed child care centers
The average weekly cost of daycare is $321, and the average weekly cost of a family child care center is $230.
5. Prescribed Pediatric Extended Care center (PPEC)
Some disabled children may be eligible for Prescribed Pediatric Extended Care centers. “For those with complex medical needs, PPEC centers are an ideal choice since they combine medical and therapeutic care into one package,” Lewis says.
Many PPEC centers provide nursing services, personal care, developmental therapies and caregiver training. This type of care is only available in some states, so check with your child’s doctor or your state’s health department.
Benefits of PPEC centers
- Comprehensive care.
- Focused exclusively on the needs of disabled children.
- Care may include medical, nursing, developmental and psychological services.
Cost of PPEC centers
Services are typically provided through Medicaid and are free for recipients.
6. Day programs
Another option to consider is a drop-off day program for children with disabilities. These programs may take place at schools, faith-based facilities, healthcare facilities or other social service agencies. These programs often take place during the school day, but may be offered after school, during summer break or on school vacations.
“These are the equivalent of schools — facilities designed to keep the individual occupied for eight hours a day among peers,” Kapsis describes. “They run through classes, depending on age, with movie time, snack time, community-activities and some offer work programs.”
Benefits of day programs
- Offers socialization.
- Provides different types of learning experiences.
- Allows the child to be a part of the community.
- Centers activities designed for children with disabilities.
Cost of day programs
Some day programs are covered by local social service programs or Medicaid; private pay day programs can range from $300 to $1000 per week, says Kapsis.
7. Respite care
Find respite care.
Sometimes you might require temporary care for your child. Respite care for special needs children “offers temporary relief to primary caregivers and helps prevent burnout to keep a happy family dynamic,” says Lewis. This type of care gives you time to restore your inner resources so that you have enough to give to your family again.
Respite care involves someone taking over your child’s care for a specific period of time, such as a few hours, a few days or even several weeks. Types of respite care include:
- Overnight care (from a caretaker or facility).
- Day programs.
- Summer camps.
- Personal care assistance.
You can find respite care through your local and state governments, your local ARC chapter, through a disability advocacy group or through the ARCH respite network.
Benefits of respite care
- Gives parents and caregivers needed support.
- Allows parents and caregivers to refuel.
- Gives disabled children opportunities for new experiences and growth.
Cost of respite care
Cost varies considerably depending on which type of service you use, and the price tag for respite care can be high. Many parents get funding for these programs through Medicaid waiver programs, or financial aid programs like a State Lifespan Respite Grant.
The bottom line
Getting clarity about the different options for special needs care can empower you to find the best care for your child. But navigating care options isn’t always easy. Families of children with disabilities often face barriers to finding trusted and safe care, Linscott says, including finding quality providers, paying for care and balancing the needs of their children with career and other responsibilities.
Thankfully, there are resources out there for parents, and Lincsott recommends using any that are available to you. “The good news is that every state has at least one Parent Training and Information Center (PTI) or Community Parent Resource Center (CPRC),” she says. “Funded by the Individuals with Disabilities Education Act (IDEA), these centers provide resources for families of children with disabilities from birth — including help in learning about accessible child care and early intervention services.”
Don’t hesitate to reach out for help and assistance. Your child’s pediatrician and your local social services department may also be able to provide you with the needed resources to ensure that your child’s care needs are met.